Jon and Jason Vanderpool

Welcome to Jon and Jason's Web Page. It has been provided to keep people updated about their progress.

The boys were diagnosed in April 1993
with Sanfilippo Syndrome, an extremely rare, degenerative, genetic disorder.

We continue to pray for a treatment and a cure.

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Journal

Wednesday, June 15, 2005 10:59 PM CDT

Hello dear friends and family!
Long overdue, I'll update with the most recent activities first, and hopefully will fill in the blanks between last summer and now at some point!

Well it's that time of year again. We met with the school district yesterday. IEPs were submitted for each of the guys, and it was up to the education supervisor to express why this special program in this non-district school is the most appropriate placement for both Jon and Jason's education.

Sometimes these meetings have been daunting and just downright depressing...seeing the boys described as "profoundly mentally retarded" in black and white is never very pleasant reading material...

But the both Jon and Jason have had a really good year. Their teachers report that they have maintained many skills and even have added new things. We shared a couple of pictures of the boys with the representatives of the school district and heard from their teachers.

Jason is very adaptable to his surroundings. He is making more eye contact and prefers 3 dimensional things (puzzles and blocks) and of course a favorite book while in a beanbag chair during leisure time. Everyone agrees that there is much that Jason understands and there is probably more that he is capable of. The challenge is to find the ways to engage him so that he can reach his full potential. We all smiled when Jason's teacher Sue said that food is a great motivator...."He never met a pasta that he didn't like" :D He is still doing well with his toileting, even with the bathroom being down the hall from his classroom. He thrives on routine, really loves school and has been very happy...especially the past few weeks.

Jon loves school as well. He has many opportunities throughout his day for gross motor activities; walks inside and out, as well as riding an adult trike. In addition, he goes swimming on Mondays, and mall walking on Tuesdays. Music therapy is also a big favorite. He has maintained his toileting ability, with the staff helping to keep things on a schedule. Jon's teacher, Elizabeth told us of Jon's compassion and sensitivity. He seems to sense when someone is upset or down. He will always choose that person to say hello to during morning circle/meeting time, or even try to hold a person's hand (however briefly) during other parts of the day when he sees they might be sad. (I cried :cry: happy tears at that one...) Jon's "kee kee"s in the hallways at school (and at home too! :D) always let everyone know that life is good. It's hard not to smile when you hear his joy.

We're all set for next year with the boys continuing in a 12-month program at Mary Cariola Children's Center called SHAPE. It turned out to be a very positive day.

Don't know what we would do without this school. The staff continues to be such a support to our family. Knowing that the boys are spending their days with people who genuinely love and care for them is a true blessing.

Until next time,
God Bless!
Love,
Debbie and the guys

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.

Email address  : djvpool@frontiernet.net